Seòmar agus comataidhean

My first observation is about the jurisdictions that have a similar model in place for assisted dying, terminal illness and capacity. Broadly speaking, we can see the conditions that patients who access that provision tend to have, and the expectation is that that would be replicated here in Scotland, and I do not think that it would be much different in England and Wales.

As I said in my opening remarks, the expectation is that there would be a requirement for the terminal illness to be advanced and progressive, so that the patient would not recover. I think that medics are used to making that diagnosis and are comfortable with it. There would also be a requirement that the diagnosis would be made by not one but two medical practitioners, which provides an additional safeguard. Over and above that, where there is any dubiety or any question in the mind of either practitioner, there is an option to refer that on to a specialist in that area of medicine.

Regarding the terminal illness diagnosis, conversations with stakeholders and observation of what happens internationally suggest that that might be more about the assessment of capacity, so the onward referral will, again, be an important safeguard and will give confidence that the terminal illness assessment is robust and thorough and that it provides the protections that patients and the wider public would expect.

You have summed it up well. You can make a strong argument for both 16 and 18, and the rationale for opting for 16 was on the basis of that being the age of adult capacity for making medical decisions. People who are 16 are deemed to have the capacity to make decisions about their treatment. There is a logic for 16; it is a very defensible case.

That said, I have heard the evidence that the committee has taken in relation to the case for 18. In other jurisdictions—whether in Australia or some of the US states—18 is the age at which an assisted death can be accessed, and the Terminally Ill Adults (End of Life) Bill that has been introduced at Westminster has a similar age limit.

It is an area on which I am keen to reflect further should the bill pass at stage 1 and as we look ahead to stage 2. As I say, I have taken cognisance of the evidence that the committee has heard, and the arguments for setting the age level at 18 are persuasive. The reason for opting for 16 is that that is the age at which individuals are deemed to have capacity to make a range of decisions in relation to their care and treatment.

There would absolutely need to be further engagement.

I would observe that the Children and Young People’s Commissioner Scotland has taken a close interest in the issue—in fact, successive children’s commissioners have done so and have expressed views. The Scottish Youth Parliament has had campaigns in support of a change in the law over successive sessions of that Parliament. The issue clearly engages younger people. It is often assumed that the issue kicks in solely for people later in life, but that is absolutely not the case.

You will probably see in the written evidence that you have received—I certainly saw it in the response to the consultation that I issued—that young people have very clear personal experience to draw on, often of older family members who have perhaps gone through a bad death, so they feel very invested in this. Therefore, if the age limit was to change, that would need to take account of any concerns that younger people might have.

The only other thing that I would add is that the numbers that are likely to seek to access an assisted death in any given year will be relatively low. I would have said that it would be around 1 per cent of the overall numbers who die in any given year. Therefore, the numbers at the younger end of the age spectrum will be exceptionally low, possibly even zero in a given year. That is not to say that it is not important to take those views into account, and I am very cognisant of some of the concerns that Children’s Hospices Across Scotland—CHAS—has raised with the committee. However, it is important to emphasise that the numbers involved are likely to be exceptionally low indeed.

Again, it is probably more appropriate to pick that up in guidance. On whether there would be an expectation that somebody in that position would refer the individual to their GP to seek support, that would seem to be the most logical option in those circumstances. That would be difficult to express in the bill, so it would be better for it to come through less in secondary legislation and more in guidance.

As I mentioned earlier, there will be training requirements for those who are directly involved, but there will be a wider training requirement with regard to raising awareness of what the change in the law means among those who are involved in health and care more generally. With regard to whether someone has a conscientious objection, it would be in their interests to understand the implications. However, as I said, that would probably be better expressed in guidance than in the bill.

I think that that would come through guidance. I can understand the committee’s frustration in wanting to understand with real clarity how the model would work in practice. Some elements can, and absolutely must, be expressed in the bill itself, but the committee will understand from this and other bills that some elements are more appropriately covered in secondary legislation, recognising that they will almost certainly need to be frequently reviewed, revised and updated.

A great many more aspects will probably need to be reflected in guidance from professional bodies, regulators and others. That is the appropriate way to take the proposal forward, I think. However, I entirely understand why there is a desire to see as much detail as possible in the bill, and I sympathise with that. I hope that I have provided that detail as far as I can in the bill and in the supporting documentation—the explanatory notes and the policy memorandum—where I have sought to flesh things out. Ultimately, you are right: some elements will have to await guidance. I think that that is a reassurance for patients and medical professionals; that is absolutely where things ought to be.

Was that okay?

I did, because I was aware that it had been an aspect of earlier bills that had come before the Westminster Parliament. However, I was not necessarily convinced that I could see what additional safeguard it would put in place.

The balance is always to ensure that the safeguards do what they are intended to do, and do not simply act as an unnecessary obstacle while not providing any protection. In that context, I understand that the committee that is looking at the bill at Westminster is likely to consider an amendment to remove that provision, although it remains to be seen whether that happens.

Again, I note that I drew a bit of reassurance—as I said to Dr Gulhane—from what the Crown Office said to the committee about the Lord Advocate’s oversight of deaths and assisted dying. That may offer the sort of reassurance that the public might have expected court oversight to provide.

As I said, it remains to be seen whether that aspect remains a part of the UK bill, but I am not convinced of the arguments for introducing it in Scotland, or that it would add anything other than a delay to the process for those who meet all the eligibility criteria.

I was ploughing a lonely furrow at that point. The Isle of Man and Jersey have picked up the pace, and we obviously have seen developments at Westminster.

The argument is not an unreasonable one. Some of the issue is about public awareness, but some of it is about the preparedness of the medical profession to deliver assisted dying. Even though the legislation may be implemented, until the medical professionals involved have the training required in order to deliver assisted dying, it may be more difficult to access over those initial stages.

The issue is about awareness, but it is also about a degree of comfort with the process and not only an understanding of it in theory but an understanding of how it works in practice.

In states in Australia that adopted legislation later on, we have seen that numbers were higher in the first two or three years than they were in states such as Victoria, which were the earliest adopters. However, at that early adoption stage, legislation was in place in other jurisdictions, and I am sure that there were fairly extensive public awareness-raising campaigns.

As such, and as we agreed almost unanimously at the finance committee, predicting the numbers is highly problematic. I have set out my best estimates by drawing on the parallels with Oregon and Victoria, which give us the longest data set to try and base comparisons on.

I would probably question whether it would be competent to do that in the bill. That aside, I think that what might be problematic in the assumption that palliative care is for everybody is that it might almost be seen as a requirement for one to go through and exhaust all palliative care options before one has the right to choose an assisted death.

As I have said, from what we have seen internationally, it is overwhelmingly the case that those who access this choice are or have been in receipt of palliative care. Moreover, the committee heard from the witnesses in Australia that, as a result of the assisted dying legislation, there had, in a number of cases, been a significant uplift in investment in palliative care, too, which, one would hope, would address some of the access issues. Perhaps even more interesting, though, was the improved engagement with palliative care—I think that that was a very clear message from one of the witnesses.

What that reflects is that the discussions that need to take place about the reasons why an individual is making the request—and then the discussion that needs to take place around the options that are available—are leading to people having raised awareness of what palliative care options are available in a way that is perhaps not happening here at the moment. I would expect that to be the case in this instance.

As I say, I think that your suggestion would be problematic. I have been very supportive of your colleague Miles Briggs’s attempts to introduce a bill on the right to palliative care—that is an important campaign, which I have strongly supported. We need to put something in place that is competent and that improves access to palliative care through the debate that is opened up and the pressure that it builds to invest more in palliative care, but I think that amending the bill in the way that you suggest, Mr Whittle, would be problematic in the same way that saying, “You are not able to access palliative options until you have exhausted all curative treatment options,” would be.

That was probably one of the first conversations that I had. The Association of British Insurers has confirmed that assisted dying would not be considered to be suicide.

The issue of language has been at the very centre of this debate. There are those who seek to draw parallels between assisted dying and suicide. In a recent statement, a number of Australian organisations involved in suicide prevention said:

“We are concerned that suicide is being confused with voluntary assisted dying. The two are very distinct, and using the terms interchangeably can be damaging.

Suicide is when a person tragically and intentionally ends their own life ...

Voluntary assisted dying is not a choice between life and death. It is an end-of-life choice available to eligible terminally ill people who are already dying. It offers an element of control and comfort over how they die when death becomes inevitable and imminent ...

Both suicide prevention and voluntary assisted dying are as important as they are distinct. Confusing these terms can delay access to suicide prevention services for people in distress, and complicate care for those who are at end of life.”

I know that you have pursued with previous witnesses the fact that the suicide rate among terminally ill people across the UK is around two and a half times the rate in the population at large. We cannot know the details in every instance, but that does tend to suggest that, in the absence of the option that is reflected in my bill, many people are taking matters into their own hands. Meanwhile, others who have the financial wherewithal and physical capacity to access the services provided by Dignitas in Switzerland are doing so, but probably weeks or even months ahead of time in order to ensure that they have the physical capacity to do so. Even then, those individuals are not able to seek the support of medical professionals or even family members, for fear of exposing them to the risk of prosecution.

I understand why there is a concern about normalising this approach to death, but we are talking about people who are dying anyway, and this is about their choice, dignity and control regarding the timing and means of their death. It is not about suicide, which is a very different issue that must be tackled differently.